Friday, June 4, 2010

Bits and Pieces

Here are a couple of things that have caught my attention over the past week or so, and some new photos I added to the Wheelchair Kamikaze gallery. Sorry, no attempts at profundity this week, just a few things I hope you'll find interesting/helpful/entertaining...

About a week and a half ago, I started taking Ampyra, the recently approved drug that's supposed to help MS patients with mobility, but so far I have nothing major to report. I guess this is one of those good news/bad news situations, since one of the drug's major side effects is seizures. So, I really haven't seen any noticeable improvement in my strength or mobility, but I haven't had any seizures, either. Woo hoo... The Today Show did a feature piece on Ampyra, and focused on an MS patient whose ability to walk improved dramatically after taking the drug. Her doctor characterized the patient as a "dramatic responder", but, though I'm trying to do my best Humphrey Bogart, it's looking like there will be no drama for me... Incidentally, though the retail price of Ampyra is an eye bulging $1800 per month, my insurance company approved my taking the drug with a co-pay of only $40 per month. So, I'll refrain from bashing the insurance companies this week, though I still firmly believe that those who occupy the executive offices of such firms all have cats eyes and cloven hooves... (click here for the clip from The Today Show)

When I was first diagnosed with MS, back in the spring of 2003, I read a bunch of books on Multiple Sclerosis. Some of them were decent, others just loads of crap. Since then, I haven't really been interested in reading MS literature, but I recently learned that Julie Stachowiak, who writes the always erudite, entertaining, and well-informed MS channel on About.com (click here for channel), published a book entitled "The Multiple Sclerosis Manifesto: Actions To Take, Principles To Live By". I decided to pick up a copy, and I'm happy that I did. Dr. Stachowiak (she has a PhD in epidemiology), who is herself an MS patient, has written a book that not only details the latest and greatest in the science and treatment of MS, and how best to manage the sudden status of being a "patient", but is also full of practical suggestions and philosophies on how to live a meaningful and fulfilling life despite the fact that MS has forced its way into it. In fact, the book could surely benefit even those not suffering from chronic illness, as the wise advice it offers, written in a highly personable and very readable manner, should be of value to any human being attempting to make their way down the twisting and bumpy road of life. The Multiple Sclerosis Manifesto definitely gets the Wheelchair Kamikaze stamp of approval (click here to view book on Amazon)...

The ever inventive folks at Honda have come up with this neato device, which they've lyrically named the "U3-X Personal Mobility Concept". It looks like quite the incredible gizmo, and with a few modifications could definitely help those with mobility issues. I don't know that in its current form it would be of much use for the severely disabled, but its ability to balance and move laterally as well as forwards and backwards is really amazing. The video itself is goofy beyond belief, but it will be interesting to see if Honda actually develops this into a workable consumer product. Perhaps at some point in the future I'll have to rename this blog “U3-X Personal Mobility Concept Kamikaze". Big shout out to Wheelchair Kamikaze reader and fellow sports car enthusiast Charlie (Tuna) for bringing this to my attention...

I've added some new photos to the Wheelchair Kamikaze photo gallery, which is comprised entirely of photos I've taken with a camera mounted on my wheelchair. The below photos were all taken in Central Park. Click on the thumbnails to view a larger image.

Mark, Don't be so quick to thank your insurance company for the $40 copay. The drug company is subsidising the cost and guaranteeing the $40 copay- for now. I bet that as soon as they get enough people hooked, the subsidy will disappear.You can still get the drug, 4 aminopyridine, from a reputable compounding pharmacy, though!Thanks for all you bring to our fine community!Nicole

Oh my! This is the funniest advertisement. I totally want to ride one of these but I think-with foot drop- I will leave my left foot behind the first time I hit a bump. Mostly I want to get my hands on a copy of this video and add my own silly subtitles. Thanks for the belly laugh.

When I did 4 aminopyridine [generic Ampyra] the benefits were subtle - improved cognition and focus, perhaps a slight improvement in strength, but nothing dramatic like turrning cartwheels. Or walking, for that matter. It took a few months, but then it was like a mental fog lifting. Haven't had any in years - after about 4 months it made me cranky - but the positive benefits remain, so stick with it.

The U3-X prototype looked like a good start for developing a hipster mobility device! The foot pads would work only for people who can hold up their feet for long periods of time (even without MS foot drop). Maybe Honda will keep fine tuning the U3-X so it could be useful for more people.

Regarding Today show's segment on Ampyra---I saw it when it aired. My reaction was "Thanks, that was informative. Now can we get see a segment on CCSVI." (Meredith Vieira's husband has MS as you probably know.)

I hope Ampyra starts to help you out more. It seems to be selective as to who it works for so I suggest you act very friendly to it:)

Thanks, as always, for the post, Marc. Honda's new mobility device reminds me of a sit-down Segway--very cute, but not as useful as my little scooter, which allows me to carry packages in several ways when shopping. But perhaps I would be less imposing and more pleasing to the public when they see me coming, and they wouldn't run about moving the furniture senselessly thinking I am way wider than I am and that I am lacking adequate skill and turning radius...

Was wondering, if I had missed it on one of your posts: (1)if you have any idea how Dr. Zamboni's wife is doing post-angioplasty .. I am not aware of how long ago her procedure was done and what follow-ups have been necessary for her or how she is faring M.S.symptom-wise. Do you know?(2) do you have a plan for add'l vascular surgery for yourself?

I have an appt scheduled for a CCSVI consultation with an interventional radiologist this week. May not choose to have any procedure done until I'm convinced about an improved technique, but I do want to know the condition of my internal jugulars and azygos veins, if possible.

Have tried 4-AP years ago and Ampyra now...makes me feel tres jittery, so it's not for me.

This new Honda "toy" will definitely show up on my teenagers christmas list this year. I can see our skateparks full of young dare devils riding these like skateboards-jumps, 180's, 360's.....but 1st it will show up on the tv show Glee as an all cast song and dance (pick an appropriate song. Anyone?) The 4-AP Reminds me of the Star Wars characters C-3PO and R2-D2 mashed together. All you need is a Chewbacca-like dog to go for a walk. The new photos are beautiful. Thanks. Kate

LOL, I can just see myself falling off that device in 2 seconds. How musch do those women weigh? 110? LOL But, hey, Honda, keep working at it. That drug, IMO any good from it is totally placebo. The MOST expensive placebo ever! Had I taken it on the right week, I too would have been a star spokes person!! One week I could stand or walk at all, Next week I was playing basketball---yepp, that's called MS.

Pam-glad you enjoyed the photos. The U3X definitely needs a little work before it can be used by people with real disabilities, I'd say they're off to a good start...

Elizabeth-thanks for the link, it really looks like Honda is doing some work that could benefit people with walking problems. Who knows, maybe we'll all wind up bionic, like the 6 million Dollar Man. Although, these days, $6 million doesn't go as far as it did in the 70s...

Nicole-don't worry, I'm not cozying up to the insurance companies. Kind of strange that the drug company would price Ampyra so astronomically, and then subsidize the insurance companies to make up the price. Like you said, they'll likely get enough people hooked, and goodbye subsidies...

anonymous-I got a big kick out of the video also. Would love to see your subtitled version...

WW-thanks for the advice, glad that the drug helped you and seems to have continued to even after not taking it for four years. I don't think Ampyra is agreeing with me, I seem to be getting a subtle increase in strength at the cost of feeling like crap. I discontinue taking it on Sunday...

kicker-I hear you. The device in the video is just a prototype, though, and you'd think that Honda would develop a version for people who weren't just lazy...

Patrice-don't hold your breath waiting for a Today Show segment on CCSVI. Ampyra has the backing of a large pharmaceutical company, which probably in some form contributes to the network's bottom line. Incredible that CCSVI has still been ignored by the American media...

anonymous-not sure which vaccine you're talking about, but the Tovaxin trials were discontinued about a year ago, because of lack of efficacy. I think they're talking about starting them up again, after going through the data and finding that the drug was indeed effective in some patients...

anonymous-glad you enjoyed the MS Manifesto as much as I did. Dr. Stachowiak is definitely a good writer who knows her stuff. Thanks for the kind words about my photos.

Anonymous-as far as I know, Dr. Zamboni's wife continues to do well for years after her procedure. Right now, I'm thinking that it would be wise for me to wait for the current techniques used to address CCSVI to be refined, since I'm very reticent to go with the currently available stents, which I think would be the only way to fix the abnormality they found in my jugular. Good luck with your consultation, please keep us updated. I plan on doing a longer post about my current thoughts about the state of CCSVI, probably later this week...

Kate-it will be interesting to see if Honda does bring that device to market. I hope they wouldn't market it to people who have no problem walking, we have enough of an obesity problem in this country without encouraging people to exercise less.

Diane-gotta think that if Honda is working on something like this, other companies must be as well. I have to disagree with you about the benefits of Ampyra being solely attributed to the placebo effect. The compound used as its basis is known to increase the conductivity of nerves. As a matter of fact, it's used as an aviary poison in its industrial form, killing off bird pests by frying their nervous systems.

Anonymous-oops, didn't see that your name was Diana. Anyway, I haven't checked out that thread on TIMS, but I will do so. BTW, you can always contact me at WheelchairKamikaze@Gmail.com.

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...